Synovial Syntax

Posts Tagged ‘BadThings

Currently on tenterhooks to see how much damage I’ve just done to my right shoulder this time. Had to catch my five year old as he fell head over tail down the stairs. As I stood there holding him up, upside down, with his head about 6 inches from a tiled floor I thought ‘Thank goodness I got him’ closely followed by ‘Argh!’.

My right shoulder is again pretty sore, have had to hit up the pain relief and anti-inflammatories. Really hoping it settles OK. No exercise, boo hoo, so I sublimated that urge by exploring how to build a Wiki for me and a few RA mates to record our exercise experiences. Hope to link to that after my trip away next week.

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as i sit down having put away 3 loads of laundry, before putting in the overnight one, before the youngest boy wakes us up sometime between 0450 and 0525 and the older one acts out any more school settling-in wobbles and i get up to spend another day on the hamster wheel with added trepidation as i try and find some work outside the home i just have to say:

it is very hard having RA, even when it is behaving itself
and the other health things
they are boring
i am boring myself
i am getting a bit damn miserable
understimulated and bleak.
I am gutted at how much pain and limitation
deflamation of everything else has revealed in my hip and shoulder.
it is very hard to be nice about things
i want to lock myself away and convalesce
i want my equanimity back.
so i can face finding out how soon i will need surgery.
it is a long winter
and i long for a day without pain or drugs
just one
and then maybe another, please.
or if not, something fun to look forward to
or a very good joke or ten
jokes without bodily functions that make a 4 year old laugh.

my blessings are counted
and i am properly grateful for them all
but sometimes if i don’t get this stuff out
i’m too burdened to straighten myself up

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I had an MRI for my TMJ on Friday afternoon. It was at 1650, with unit closing at 1800. Which will be relevant to this post. I’d had a head one done years ago as a ‘normal’ subject in a research study on thought process in schizophrenia (insert obvious joke here), and it was water off a ducks back.

This time though, I panicked. I did not know I was going to be cannulated, and am still not clear what substance was going to be introduced into me, something for contrast apparently, towards end of process. It was a full body scanner, with special plastic head clamps and headphones which get me rigid in position, which I had no time to adjust to.

I hadn’t thought it through at all, so kept my eyes tight closed. Of course, my chronic nasty sinuses started draining and I needed to cough. I opened my eyes to get my bearings, saw my nose and mouth unexpectedly reflected at me, thought I looked young, thought ‘I want my mum’ and promptly threw up the muffins I’d cooked as a treat at home for the boys before leaving. Grossly, I had to swallow this rather than aspirate it, while pounding the panic button for all it was worth.

I was almost wordlessly removed and detangled, told I could either not have it done or go back to GP for sedation for second go round, and bundled out with no other care. I was so shaky! Bah I say.

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As I’m having a dent thumped in my recent breeziness inspired by good response to Humira, I was thinking about RA Guy’s rollercoaster vid he posted earlier in the year (I can’t find it RA Guy!). I thought it a potent and grinding description of the flares of RA. I see today he’s also been posting about how at least it’s not boring!

I can’t agree more. I expect that this minor set back I’m having will only sweeten my memories of recent good times. And maybe they’ll come again, maybe they won’t. I do kind of like that while I was better I was obsessed with same-old-same-old route back to same-old same-old work, but that now I’m thinking creatively about it again. How to and when to get back to work if the Humira promise turns out to be short lived. It’s much less boring to have a challenge, and a new view on things.

Oh lordy. Had a very extreme pain crisis yesterday afternoon and night. Right jaw – for which I have a maxillo-facial consult booked for end of October. Have had this pain on and off since November last year. Thought it was toothache, 4 visits to the dentist later, root canal work and a night-time bridge thingy later, she says – it’s not your teeth.

Yesterday, the pain was worse than labour, relieved only by squeezing up co-codamol pain relief into every 4 hours and taking 2 glasses of wine. Bum in air, forehead on floor also helped as my jaw was kind of hanging there not hurting anywhere near as much. Thought I’d got away with it, went to bed very dozy, woke in great pain again after 30 minutes went straight to A&E. Exemplary history taking, quick access to nurse and then doctor. Who did the best exam of the area I’ve yet had, says it’s the RA. Gave me Tramadol and a different presentation of codeine for today. Strict instructions to see GP today.

Rang GP twice at 0830 when lines open, coudn’t get through. Took older boy into extra session of pre-school (thank you to them, a thousand times for having him). Baby zonked out with start of cold now. Called GP again at 0930. No appointments free. No advice on how to access any medical care. I want to understand differences between pain killers, and have a stash of Tramadol against repeat emergencies. Also, seriously considering getting private MRI of jaw, by practice in Harley Street who have a maxillo-facial specialist on their list. About £300. But! I need a GP referral for this.

Back to square one then. Have my phone timer on and am calling practice for cancellations every 45 minutes. Can they call me if they get one? No! I am in pain, I find it very hard to care for the kids, my husband doesn’t earn if he doesn’t work. I don’t like this, no sirreee.

One of the (few) lucky things about getting RA is that I had a good stock of emotional intelligence to try to handle it. It is still really tough to come to terms with, even at this relatively early stage of this progressive and chronic situation. However, I know that happy-ish people like myself return to being happy-ish under even more extreme conditions, and that woe-be-gones are woebegone a year after a big lottery win and marriage to Prince Charming. I’m lucky I haven’t had too hard a time doing that part of acceptance – turning my head upside down and looking for the positive. See PollyannaPenguin’s blog link to the right under the header for a great example.

Here are some examples of me flipping the negative over:

  • This really hurts = praise be to live in a time with reasonably effective pain relief with reasonably manageable side effects
  • My life is over = my life has really taken an interesting twist now
  • I am isolated and lonely = praise be to live in the wired world when I need it but even more it’s great to have a chance to focus on some deep stuff
  • I am exiled from the world of work = the world of work was also a hard place to be, and now I can be left field about how to contribute and entertain myself
  • I’m poorer than I expected = phew, I’m slowing down and may get off the consumption roundabout
  • I’m frightened = I’m rising to the challenge
  • I can’t do what I need or want to do now = I can focus on the essential and important and get there in the end. I can find inventive workarounds and I can tap into others’ humanity to get help or have some slack cut for me
  • My body is useless = my body and mind are amazing to keep going any which way with this, and I’m lucky to live in an age of healthcare and cheap, easy heating and food.
  • Healthcare provision and practices are patchy = er, well I haven’t really conquered this one. I’m alright Jack, I’m lucky-ish compared to others is the best I can do here.
  • Don’t get me wrong none of the above are given flippantly, or achieved easily. But if all I can do is sit on my arse and fret, a lot of the time, it might as well be productive as not, heh?

    Been titillating myself with thoughts of actually working on a big post about the weather but got sidetracked with another’s blog instead. Not vanity as in titivating ourselves, but in enjoying how we feel about ourselves. Remind me never to post about this subject again, as this lady says it all and it really is a bit of a downer to think about too much.

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